Chronicling the adventures of one amazing, funny, sweet, outrageous young lady, who happens to have CHARGE syndrome!

Wednesday, March 28, 2007

Marshmallows!

Yep, she may not eat much orally, but she DOES have her favourites! Marshmallows are right up there on the list along with Goldfish crackers (well, not eating so much as licking all the salt off), yogurt tubes, and ice cream.

Today we had an appointment with the pediatrician - she's up to 64 lbs and 48 inches, so her weight is staying right in the 50th percentile but her height is really low at only about the 5th percentile. She had some blood work done through endocrinology about a month ago, but we haven't got the results back yet. Those results will tell us whether or not she needs to go for further growth hormone testing. She just may be short. The endo is just concerned because Graeme and I are both in the 90th percentile for height and children are usually similar to their parents. That's not throwing "CHARGE" into the mix, however. Time will tell, I guess. Anyway, other than that, she's good 'n' healthy otherwise, she got a clean bill of health from good ol' Dr. Todd.

School is so-so at the moment - I'll save that for another post. Big meeting at the school next week.

WELCOME!

Today is...

Team Kennedy CIFC

What is CHARGE Syndrome?

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. Better understanding will lead the way to interventions, therapies and educational strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.

One of the hidden features of CHARGE syndrome is the determination and strong character these children display.